Characterising Informal Care in Older Individuals Receiving Long-Term Home Care Support: A National Epidemiological Study

Objective: To examine the prevalence, trends and geographic variation of informal care reported by individuals accessing long-term home care support between 2012 and 2019 in Australia. 

Methods: Population-based national cross-sectional study using the Registry of Senior Australians (ROSA) National Historical cohort. Non-Indigenous individuals 65–105 years old who accessed long-term home care through a Home Care Package between 01 January 2012 and 31 December 2019 in Australia were included. Informal carer availability was ascertained from individuals' aged care eligibility assessments. Informal carers are individuals who provide unpaid care and support to others. Socio-demographic and clinical characteristics of those with and without informal carers were examined. Yearly trends and geographic variation in the proportion of individuals reporting a carer were examined. The effect of a 1-year increase in receiving initial long-term home care on the probability of having a carer over time was described using an odds ratio (OR) and 95% confidence interval (95% CI) from a logistic regression model, adjusted for age, sex and dementia status. 

Results: Overall, 233,567 long-term home care recipients with known carer status were studied. The proportion of care recipients with an informal carer decreased from 86% in 2012 to 78% in 2019 (adjusted OR: 0.95, 95% CI 0.95–0.95). The decrease in informal care reported over time was more pronounced in females (OR: 0.96, 95% CI 0.95–0.97) than in males and in individuals without dementia (OR: 0.95, 95% CI 0.94–0.95). Visualisations of informal care prevalence showed substantial geographical (range: 60%–98%) variation nationally. 

Conclusions: There was a decline in reported informal care availability for older Australians entering long-term home care between 2012 and 2019, with substantial national variation. Lower informal carer availability likely translates in greater formal care needs.